Cue Mrs. Braddock's Laugh Post #4,567,234

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Cannabis Oil Questions Answered, No. 8

The early days, Sophie aged 5

Do you ever use straight THC as a rescue medication? Do you worry about her getting high?

Yes, I do. And no, I don't. In fact, just this morning I woke to the awful sound of Sophie seizing in her bed. The awful sound includes grunts and thrashing limbs, sometimes a scream. I dashed from my room to hers and was assailed, immediately, by the smell of seizure. A certain type of tonic-clonic seizure induces not just a pungent body odor but nearly slick-with-sweat palms and feet. I don't know what this is other than a response from the autonomic system, but it makes my heart sink because it often stays for days. I actually hate this state more than anything, other than the seizure itself. I have no idea why my reaction to it is so visceral, but I imagine it has to do with powerlessness. Sophie has been doing quite well with the new strain of cannabis. She's going many days and sometimes even more than a week with no big seizures. I also give her THC at night, but only a tiny amount. I'll leave a discussion of that for another post, but suffice it to say that THC is very necessary for most kids with seizures and is the reason why CBD-only laws are often counter-productive. Whole plant medicine, ya'll.

I've gotten off track, as usual.

The answer to the question is, again, YES. I give Sophie extra THC, straight, as a rescue medication and it works. This morning, after that first seizure she had another, and after that, when she was still in a post-ictal state which means there was a bit of jerking and weird posturing, I drew up a small amount of THC oil into a syringe, shot it into the side of her mouth and massaged her cheek. She had already stopped seizing, so I wasn't giving it to her in a status state, but do you know that the clamminess and body odor -- the things that would ordinarily persist for days after such a big seizure -- disappeared? Her palms were dry, no body odor and everything hunky-dory. No more seizures, either.

Put that in your pipe and smoke it.

As for worrying about her getting high, cue the Mrs. Braddock laugh.



















*My cousin Maria sent me the photo above along with the ones below. There's something so sweet and nostalgic about them. I hardly remember those days, but then -- I do.

Henry, 22 months old

Me and Henry, aged 22 months and my father's foot

Saturday Cue: Mrs. Braddock's Laugh

I periodically use the cue words: Mrs. Braddock's laugh. That iconic scene from The Graduate includes the most maniacal, fabulous laugh ever uttered by a character or an actor with the possible exception of a Jack Nicholson sneer from one of his iconic roles. The laugh is something that I call upon during difficult or absurd situations, most of which happen during my interfaces with the Systems of Care around Sophie's epilepsy. Even if I am the model of restraint, calm and cool, on the inside, I'm throwing my head back and screaming the scream of the absurd.

Watch the whole clip, because the last two lines of it are also pretty damn fabulous.

Ben, this whole idea sounds pretty half-baked.

No, it's not. It's completely baked. It's a decision I've made.

Surfing Around With Admins, Internecine Wars, Opioids and Arthritis

Given that it's nearly 11:00 Pacific Time, and most of you are already in bed and might be reading this tomorrow morning, let's just surf around tonight.

First of all, did you know that the FDA recently approved the use of Oxycontin for patients aged 11 to 16? Unless you've been living under a rock, and that's perfectly acceptable given what's going on in this crazy old world, oxycontin is a long-release painkiller that acts upon the brain like heroin. Here's the statement, reported by NBC news:

Dr. Sharon Hertz, director of new anesthesia, analgesia and addiction products for the FDA, said studies by Purdue Pharma of Stamford, Connecticut, which manufactures the drug, "supported a new pediatric indication for OxyContin in patients 11 to 16 years old and provided prescribers with helpful information about the use of OxyContin in pediatric patients.

Cue Mrs. Braddock's laugh.


Well, you know where this is going, right? I'm not going to put down anyone who wants to alleviate the suffering of a child in pain, but reeeeeeeeely? Raaaaaaaaaaahly?

As you know, my tiny little mother mind™ has been working overtime with countless other minds, far greater than my own, trying to lobby and persuade The Powers That Be that the efficacy of Charlotte's Web, of cannabis, of medical marijuana, etc. is far stronger than anecdote and certainly not attributable to the placebo effect, that it's a plant that's been used for thousands of years, that there are studies -- oh you know what I'm saying.  But hey, what do we know? What do they know?

Yesterday, I visited a prominent orthopedist in Beverly Hills, a young and handsome doctor who probably replaces the knees, shoulders and various body parts of a plethora of celebrities given the location of his office. Last week I developed a bum knee overnight, was driven, quite literally, nearly to my knees one afternoon with a stabbing, horrific pain, a sort of grim reminder that yes, Elizabeth, you are turning 52 years old on August 27th and have taken for granted your solid southern Italian peasant ancestry and were over-confident that these strong genes were somehow going to protect you from the vagaries of age. To make a long story short, my right knee has a touch of The Arthritis, but not enough to warrant any sort of treatment, which given that it'd be one of those gigantic steroid shots that I understand work but that actually spark up the primitive part of my brain that recalls injecting high dosage ones into my daughter's baby legs two decades ago -- I declined. I did ask the good doctor, though, about cannabis and its anti-inflammatory effects and if he'd heard about any of that. He gave a short, impatient laugh, waxed on a bit about how the claims that it cures everything! couldn't be taken seriously and that there wasn't any research, yadda, yadda, yadda.

OK.

The weird thing is that this headline:

FDA Approves OxyContin for Children as Young as 11

(read the whole article here) just doesn't surprise many of us and turns our already cynical and tiny little mother minds™ into tiny, little obdurate bricks. Show me the studies -- double-blind, placebo controlled, long-term studies of children.

Let's catch another wave, shall we?

Back on the ranch -- the marijuana ranch, that is -- I got into a little sparring with the self-described admins of a group on Facebook called Pediatric Cannabis Therapy. These admins (and really, why do we have to shorten the word adminstrators to admins?) decided that discussions about Charlotte's Web Hemp Oil (CWHO) and the Realm of Caring (ROC) are no longer allowed. I wish I could quote the rest of the message that they posted, but that wouldn't be ethical for a closed Facebook group. Suffice it to say that it was riddled with not just grammatical errors (which, admittedly, drive this tiny, little mother mind™ batty) but vindictive statements and lies pitting advocates of CBD legislation against those who hope for whole plant legislation. First of all, these two groups need not be mutually exclusive, but according to Pediatric Cannabis Therapy's new rules, they are. The amount of work that Paige Figi, the Stanley Brothers, Heather Barnes Jackson and a virtual army of volunteers in nearly every single state in this country has done in a a very short amount of time -- to help sick children get access to medicine -- is nothing short of astounding and admirable. CBD-only laws are not perfect ones, and most of us believe that they are but tiny steps toward a larger awareness of this plant's many benefits. It's been more than 80 years since marijuana was basically forced underground for political and economic reasons, and during the last sixteen months, enormous progress has been made by pretty desperate women and men whose children's lives are at stake.That being said,  members of the Pediatric Cannabis Therapy group were warned not to discuss Charlotte's Web by name or they'd be asked to leave the group. Insults flew for a bit and while I dropped in here and there (you know, surfing the waves, trying to stay cool, look cool), I finally unjoined the group. The crazy talk has happened before, and I just can't be bothered with it anymore. While perhaps boring to those of you who have no interest in The Marijuana Wars, today I wanted to suggest that those of you who do have an interest should probably avoid the Pediatric Cannabis Therapy Group for anything but the lowest form of entertainment -- a sort of Monty Pythonesque Office of Arguments:



I will say that many hundreds of decent people exchange valuable information there in spite of those pesky admins destroying the synergy (another ridiculous 21st century word that they didn't use but that bugs me so much I thought I'd throw it in there with the dirty bathwater), so if you decide to stay in the group or choose to join the group, I advise you to steer clear of The Admin Who Is Not a Beach Boy or certainly don't talk directly about The Product That Cannot Be Named.





After that shredding, I'm prone out.

Cowabunga!

Rain, The Minotour, Mrs. Braddock's Laugh and What's Baked

Raindrops on roses
and echeverria
Dear, dear Jesus
thank you for rain 
and the plumeria.



Do you remember The Efforts To Acquire The Chariot and then Busgate? In a nutshell, it took about eighteen months and some serious Insurance and MediCal wrangling to get a wheelchair for the girl (because, you know, I might have been making up her disabilities and trying to acquire a $10,000 piece of metal for the hell of it), and then too many IEPs and phone calls to LAUSD that brought to mind an episode of Monty Python to get a lift bus for her. Sophie is supposed to have been riding in her chariot on a lift bus for, basically, years, but it wasn't until this week that one mysteriously arrived at her school. I got a call on Tuesday afternoon from her bus aide, Saint Charles, at about 3:30.  The lift is broken, Charles reported, we're going to be late because we're waiting for a mechanic. I threw back my head and laughed, Mrs. Braddock-style (watch this scene, if you don't know what I'm talking about). God, I love that scene. How about her psychedelic shirt, Mr. Braddock's robe, his drink, the half-baked comment -- hmmm, I digress. I told Charles that rather than wait for the LAUSD bus system mechanic (visions in my tiny little mother mind™ of The Man Behind the Curtain in Oz pulling all those levers to get the bus mechanic ), I would drive over to Sophie's school and pick her up myself, so by the time I got there, picked her up and brought her home it was about 4:15ish, and just an hour after she had been dismissed. At 5:30, the telephone rang, and when I picked it up, the Efficient LAUSD Robot said, This is a call from the LAUSD bus system. Your daughter PAUSE Soooophie is on a bus that will be approximately 75 minutes late.

Go back to that link of Mrs. Braddock's fantastic laugh.

Today, the lift bus pulled up while I stood at attention on the sidewalk and then waited as The Busdriver did some kind of maneuvering inside, walked to the front of the bus and then down the stairs and came out. I told her that I didn't think the lift would clear the curb, that she would probably need to back up to the driveway, so she stood and stared a bit and then walked back to the bus, shifted it into reverse and backed it up. The beeping sound emanating from the bus was so loud that I had to cover my ears. When the bus driver climbed back out of the bus to deal with the lift, the beeping continued, and as the lift lowered, I saw that Sophie had startled into a seizure so I asked the bus driver to please turn off the beeping sound and simulataneously put my hands over Sophie's ears to muffle the cacophony. I also noticed that the bus has a name, and it's Minotour. You can't make this shit up, as my old writing instructor used to say. The letters, spelled exactly like that, are right above the door. Now, I am prone to metaphorical flights of fancy, as you know, and I know you lovely Readers are, too. Let's have a game about a bus named Minotour.

Give me what you got.

How We Do It: Part XLVIII

It gets better.

Me

Sophie was scheduled for an ambulatory EEG this afternoon at 3:00. It's been on the books for about a month, but I haven't been thinking about it because I hate the whole process. The ambulatory part is a godsend -- no hospital! -- but there are all the leads, the stinking glue, Sophie's curly, curly hair, the clean-up, the smell and, of course, the significance. Sophie has always had an abysmal EEG -- the kind of EEG that is, frankly, pretty hopeless. She's probably had at least ten in the last nineteen years, most of them in-hospital. Every single one is wildly abnormal. I won't give you the jargon. She hasn't had one in three years, though, and we thought it was time, particularly given the dramatic reduction in her clinical seizures since we started giving her cannabis oil. Yesterday afternoon the lab called to say that the insurance company claimed Sophie wasn't a member, so I went into my clipped and efficient mode and got that ironed out (our id number was transcribed wrong). This morning, I got a call from the EEG lab with the news that they are Out-of-Network for HealthNet and that we would be subject to the 50/50 rule after the insurance company pays the usual and customary rate. How much is that?, I asked. The financial person told me that, historically, insurance companies have determined the cost to be around $120, so I would be reimbursed for 1/2 that or $60. How much is the EEG? I asked. She said, Around $1700 or so. There is no other ambulatory EEG facility in the area, and MediCal is not contracted with them either. My options at this point are to admit Sophie to the hospital for an overnight EEG (out of the question), pony up and pay (the usual choice that has strained our finances for nearly twenty years), or appeal to HealthNet and request that they pay the in-network rate (throw my head back and laugh maniacally). Reader, if you're still here, please scroll up to the video that I posted at the top and forward to :23 seconds, maybe one of my favorite scenes in the movie, when Benjamin tells his parents that he's getting married, and Mrs. Braddock throws her head back and screams the most fantastic laugh you'll ever see on film. I am Mrs. Braddock, and that's what I do in my mind whenever I have situations like this EEG one. I no longer feel stressed, to tell you the truth. What might have caused me to weep copious tears, to tear at my hair, literally, to feel the poison of anger and adrenaline coursing through my veins, has disappeared. Mrs. Braddock enters my mind, and I throw back my head and let out a screaming laugh. After nineteen years, I'm here to tell you that it gets better. That's how I do it.